When Kolbie was first diagnosed with celiac disease, I assumed the symptoms lived in her gut. Bloating, stomach pain, fatigue, those made sense to me. Then I kept seeing the same term in the celiac groups and medical guides I was reading: dermatitis herpetiformis. I had no idea what it meant. The name made me think of a virus, which it is not. I spent a weekend working through celiac organization resources and dermatology references to understand what it is and whether it connects to celiac.
What dermatitis herpetiformis is
Dermatitis herpetiformis, which I'll call DH from here, is a skin condition tied to gluten. The "herpetiformis" part comes from the way the bumps cluster in groups. Early doctors thought the grouped sores looked like herpes, so the name stuck. DH has nothing to do with the herpes virus.
DH is an autoimmune reaction. When someone with DH eats gluten, their immune system makes a type of antibody called immunoglobulin A, or IgA. That antibody settles in the skin and triggers the rash. The celiac resources I read describe DH as the skin presentation of celiac disease, not a separate unrelated skin problem.
The celiac connection
There is a direct link. DH and celiac disease share the same trigger: gluten. In celiac disease, the immune reaction damages the lining of the small intestine. In DH, the immune reaction shows up in the skin. Many people with DH have the same intestinal changes seen in celiac disease, even if they do not feel stomach symptoms. Some people with DH have noticeable digestive issues too. Others don't.
The estimates I saw in celiac organization materials ranged from about 10 to 15 percent of people with celiac disease also developing DH. That means most people with celiac never get the rash. DH also tends to show up more in adults, and the resources I read noted it appears more often in people of Northern European descent. Different studies report slightly different ranges, but the pattern is consistent: DH is one of the ways celiac can present.
What DH looks and feels like
DH starts as clusters of small, red bumps or blisters. The itch is intense, often described as burning or stinging. It appears on extensor surfaces, the parts of the body that straighten. Common spots include:
- Elbows
- Knees
- Buttocks
- Back
- Scalp
The rash appears symmetrically. If you have it on one elbow, the other elbow is usually involved too.
The itch can start before the bumps are visible. A person might scratch for days before the rash fully appears. That detail stood out to me because it is easy to mistake for eczema or an allergic reaction at first.
How doctors diagnose DH
Diagnosing DH is not a do-it-yourself project. A dermatologist usually takes a small skin biopsy from the skin right next to a blister, not the blister itself. The lab looks for those IgA deposits in the skin. Blood tests for celiac antibodies are often part of the workup too. Some doctors also recommend an intestinal biopsy to check the small intestine.
If you or your child has an itchy, blistering rash that keeps coming back, the next step is a doctor visit. Celiac resources consistently advise against going gluten-free before testing, because that can change the test results.
What helps, from what I've read
The celiac and dermatology resources I read all point to the same core approach: a strict gluten-free diet. Because DH is triggered by gluten, removing gluten is the main part of caring for it. The rash often takes months to fully clear, even after gluten is gone. Iodine makes DH flare in some people, so some resources suggest talking with a doctor about whether to limit high-iodine foods like certain seafoods and iodized salt. That is a conversation for a medical team, not something to guess about.
A medication called dapsone is sometimes prescribed to calm the itching while the gluten-free diet does its slower work. Dapsone calms the symptom. The gluten-free diet removes the trigger. I am not a doctor, and I am not telling anyone to take or avoid dapsone. I am sharing what the medical literature describes so you can ask better questions at your own appointment.
I am a mom who reads a lot and lives with celiac in my house, not a clinician. Talk to your doctor or dietitian about your specific situation.
What this means in our kitchen
Our family already eats gluten-free because of Kolbie's celiac disease, so the food side of DH would look similar for us. Gluten-free pantry staples, careful label reading, and a watchful eye for cross-contact are already part of our routine. If DH ever showed up in our house, the kitchen would not need a huge overhaul. We would keep leaning on the same gluten-free building blocks we already use: simple seasonings, clean broths, and meals made from ingredients we can pronounce.
Clean Monday Meals products are gluten-free, dairy-free, and soy-free, which is why they sit in our pantry. I created the ramen seasoning because Kolbie missed ramen after her celiac diagnosis. If you are building a gluten-free kitchen for any reason, celiac or DH, having staples you trust makes the daily work feel less heavy.
The short answer
There is a real link. Dermatitis herpetiformis is considered the skin form of celiac disease. The same gluten trigger is behind both. If a strange, itchy, blistering rash keeps returning, especially on elbows, knees, or the backside, a dermatologist can help sort out whether DH is part of the picture. The same gluten-free approach that is part of celiac care is the foundation for DH care too.
If you are newly navigating celiac or DH, you do not have to figure out every meal from scratch. Our free Recipe App has hundreds of gluten-free, dairy-free recipes, plus meal planning tools and shopping lists. You can sign up at cleanmondaymeals.com/pages/meal-planning-app. And if you make something from the app, tag us @cleanmondaymeals so we can see what is on your table.